By Domna Antoniadis, JD
Legal service attorney, New York
Daniel Boxer, MD
Laura and Isaac Perlmutter Cancer Center, New York University School of Medicine and Langone Medical Center
In the past 2 years, Bellevue Cancer Center's legal clinic saw more than 75 patients who were ineligible for lifesaving transplants, or for clinical trials, purely because of their immigration status. Since undocumented patients are barred from purchasing most insurance, or qualifying for public insurance, these patients met with a lawyer to determine if there was an insurance or immigration remedy that could save their lives.
Because of the U.S.’s current immigration and health care policies (a rapidly changing environment, as we have seen over the last week alone), without zealous interdisciplinary advocacy, an undocumented 35-year-old woman with Philadelphia chromosome–positive (Ph+) acute lymphoblastic leukemia may receive the standard combination chemotherapy and tyrosine kinase inhibitors (TKI), but is not eligible for myeloablative allogeneic hematopoietic stem cell transplantation (HSCT), which has been shown to be the only realistic chance for a durable remission in this specific disease.1 If it were not for safety-net hospitals and pharmaceutical donations, she wouldn’t even get the standard treatment.
Ironically, for most of our undocumented patients, their last hope for treatment is with the help of a lawyer—yet many of these individuals still die because they came too sick or because we could not manage the chaotic and bureaucratic immigration system in time. While Bellevue may be the largest safety-net hospital in New York City, it is difficult to believe that this problem has not haunted hundreds of other hospitals or providers.
Despite the overwhelmingly high number of immigrants in the United States, the federal government does not provide straightforward ways of legalizing their status. Frequently, the difference between an illegal immigrant and a legal one has more to do with the ability to hire a good lawyer than with their underlying claim of relief. Yet due to a blanket ban on federal funding for most undocumented immigrant health care needs (and few states that provide care out of their own funds), oncologists frequently struggle with inconsistent restrictions that interfere with their ability to appropriately treat this population. With the arrival of a new administration and potential reforms in immigration and health care, the oncologist’s role in advocating for the immigrant patient is imperative.
Where is the anger that this is the fate pushed onto these individuals? Why is the medical community not raising their voices against legislation that harms our patients? How can medicine sit back and watch young people die from curable cancers without fighting back? Why did the oncology community not challenge when, following a financial audit of Medicaid spending, CMS determined that chemotherapy was not considered emergency treatment and thus in that instance effectively denying any federal funding for undocumented patients with cancer?
Despite the exclusion of such a massive population from traditional health care, there are limited data on what happens to them, or how these policies impact oncology. How many patients are denied treatments, and how does that impact providers? What happens to the patient with leukemia who cannot receive a transplant? How many are told their only chance for survival is a procedure they cannot afford? Where are the case studies of the patient with lymphoma who was in a detention center for 4 months with minimal medical attention? What is their death like? Why are we not sharing this—the pain, the hopelessness, the cost of a life arbitrarily thrown away with no one to watch but his family and doctors?
The United States cannot continue to hold on to the illusion that the undocumented immigrant population will just go away. As this group ages, they will age here in the United States, and the influx of patients with cancer presenting at emergency rooms and safety-net hospitals will overwhelm our systems. Most undocumented immigrants are long-term residents: in 2014, undocumented immigrant adults had lived in the United States for a median of 13.6 years.2 Many have claims for humanitarian relief or family adjustment, which allow them legal grounds to contest any attempted interior removals in Immigration Court. With Immigration and Customs Enforcement (ICE) conducting less than 100,000 interior removals a year, and a 3-year backlog before even a first hearing in Immigration Court,3 the claims of mass deportation of even half of the 11 million immigrants is impossible short of the creation of a total police state and international human rights violations akin to the early stages of genocide.
The proposed immigration solutions are simply not feasible. The “reasonable” suggestion that just 2 to 3 million will be deported and then the system will be revisited is a process that would take decades.4 Alternative claims of self-deportation and then waiting to reenter lawfully is a logistically doubtful option given laws which subject those who are out of status over 1 year to mandatory 10-year bans from ever returning to the United States. Even with waivers, the current backlog of family-sponsored petitions ranges from 2 to 24 years.5 As we already see, employment-based visas are quickly capped and many of us (especially those working with transplants) have seen patients die because the sibling-matched donor was denied a visa.
As the government continues to spend billions of dollars trying to figure out how to remove populations larger than those of most states, undocumented immigrants will continue to age and become ill. Due to a relatively small elderly population, we have only seen a small portion of the undocumented immigrants in our cancer clinics, but that will soon change.6
Our current charitable approach to managing cancer care for undocumented immigrants diverts public responsibility for the social marginalization of this group. Ultimately due to large uninsured rates and no federal funding for preventative care, most of these patients will come to the hospitals sicker than ever before. In 2011, 71% of undocumented immigrant adults were uninsured; the remainder were primarily insured through employment.7 With insurance closely linked to employment, key questions include how undocumented patients with cancer would be able to afford insurance and how they would find alternative forms of health care. Leaving such a large population uninsured for such a long period of time will have profound implications for safety-net health centers, hospitals, and other providers, as well as the local governments and private sources that fund them.
These staggering data put into perspective the potential large-scale public health crisis headed our way. These patients will not die on the street, they will die in our hospitals, and the financial burden will lead to increased pressures to violate ethical obligations, signing off on unsafe discharges and even medical repatriation. It’s not just a humanitarian argument that should compel the medical community to action. There’s an economic, even a self-interest, argument to be made. Not only is the government’s approach to immigrant cancer care harming undocumented patients, it also hurts research funding, total health care costs, and quality care for the rest of the country.
Pharmaceutical companies spend millions of dollars trying to get patients into clinical trials, yet also spend millions providing charity care to the undocumented patients. Lifesaving treatments are not being approved fast enough for the world to benefit, and the costs associated with clinical trials have led to drug prices that are bankrupting our health care system. If pharmaceutical companies didn’t have to subsidize the federal government’s restrictions on care for undocumented patients with cancer, would we see these costs decrease?
It is time to act. It is time for the medical community to vocalize the impact of these policies. To contest the cruel reality that the otherwise-eligible undocumented patient being treated at a safety-net hospital cannot participate in the clinical trial struggling with enrollment in the adjacent academic hospital. To share their stories of lingering guilt of not being able to treat a treatable patient, or the anger of sentencing individuals to a harsh and expensive death because their hands are tied. Meaningful change in immigration and health care policy makes logical sense. In fact, the health care system we all depend upon requires it.
Ms. Antoniadis is a legal service attorney in New York. Dr. Boxer is a hematology oncology fellow at the Laura and Isaac Perlmutter Cancer Center, New York University School of Medicine and Langone Medical Center.
- In 2007, the Centers for Medicare & Medicaid Services informed New York officials that chemotherapy does not qualify for a provision of Medicaid that allows coverage for emergency services for undocumented immigrants and other noncitizens. New York and several other states continued to cover chemotherapy through state-only funds. For the remaining states, these patients can only receive chemotherapy through charity care. Available at: http://khn.org/morning-breakout/dr00047696/.
- In 2014, undocumented immigrant adults had lived in the U.S. for a median of 13.6 years. About 66% of undocumented adults had been in the U.S. at least 10 years. About 86% of adults lived in the U.S. for at least 5 years. In: Krogstad JM, Passel J, Cohn D. 5 facts about illegal immigration in the U.S. Pew Research Center. November 3, 2016. Available at: http://www.pewresearch.org/fact-tank/2016/11/03/5-facts-about-illegal-immigration-in-the-u-s/.
- Immigration Court Processing Time by Outcome. Available at: http://trac.syr.edu/phptools/immigration/court_backlog/court_proctime_outcome.php; FY 2016 ICE Immigration Removals, U.S. Immigrations and Customs Enforcement. Available at: https://www.ice.gov/removal-statistics.
- While the feasibility of this number is compared to the 2.5 million immigrants removed under President Barack Obama's 8-year administration, it fails to recognize that less than one-half were from interior removals and the majority were newly arriving undocumented immigrants who are generally not entitled to full hearings.
- As of October 2016, Mexican family-based visa categories were so oversubscribed that applications are still being processed from 1994. In: Visa Bulletin for October 2016. U.S. Visas. U.S. Department of State Bureau of Consular Affairs. Available at: https://travel.state.gov/content/visas/en/law-and-policy/bulletin/2017/visa-bulletin-for-october-2016.html?src=MyGCVisa.com.
- As of 2015, 72% of the undocumented immigrant population was between age 18 to 44; just 17% of unauthorized immigrants were age 45 to 64. Only 1% of these immigrants were age 65 or older, versus 13% of the total U.S. population. In: Capps R, Fix M, Van Hook J, et al. A Demographic, Socioeconomic, and Health Coverage Profile of Unauthorized Immigrants in the United States. Migration Policy Institute; May 2013. Available at: http://www.migrationpolicy.org/research/demographic-socioeconomic-and-health-coverage-profile-unauthorized-immigrants-united-states.